LPR/ what is going on?

[hellbennt]

hiatal hernia?

[Anonymous]

When they did endoscopy they said everything looked normal. No hernia and the valve was closed. Whatever that means.

[Anonymous]

I specifically asked for them to check for that during the scope. Nothing!!

[Anonymous]

Is there anyway we can have a thread (or whatever u call it lol) with just outgrow it stories?? I know you have a hip hip hooray section but that also includes success of getting the reflux controlled! Can’t we have a ‘praise the Lord, the reflux is gone!!!!’ Thread?

[Anonymous]

my son was never actually diagnosecd with anything—i’m just guessing that he had MSPI because of what i learned about it after i joined this board 8 years ago when sylvia was born. he spit up alot and he was very small and did not look healthy. i talked to the doc about how small he was and they checked his thyroid, which was fine, but we discovered he was anemeic. i checked a couple of my other kids and we found that one of the twins was also anemic. they both had to be put on an iron supplement for awhile.

a PH probe is really not a big deal, sylvia acted like she didn’t even know it was there. a hiatal hernia does not necessarily show up during a scope unless it is puahing through when they do the scope. we were told that sylvia did not have a hiatal hernia—but when they went in to do her fundo, the surgeon told us that she had a good size hiatal hernia. sylvia was a little worse than most of the babies have been on this board because she was getting alot of esophageal damage and she required a fundo—-most babies do not get as severe as sylvia did and do not require a fundo. when i discovered how bad off she really was, i felt like she was a pretty good baby considereing her condition. when i first joined this board and read people’s stories i remember that i thought sylvia was not nearly as bad as the other babies on here. i think that i had just had a lot of kids, she was my 9th, and i had had other fussy babies, so maybe i knew a little more of what to expect—-and didn’t suspect anything was seriously wrong to begin with—escept that she had to come home on oxygen for a month.

every baby is different. i found that i really didn’t have fussy babies until they changed the recommended sleeping position from tummy to back. my first 5 were tummy sleepers, my last four were supposed to be back sleepers—–the 3 older than sylvia were fussy and restless for about the first 3 months before they settled down and started sleeping better. my 14 year old would only take cat naps until he was a year old. i was lucky if i got an hour nap out of him, but he eventually took a 3 hour nap like most of my kids did.

i was never able to get sylvia to take a nap in her room. since she had problems until she was two, i would rock her to sleep and put her down on the couch for her nap. i don’t even remember when i finally got her sleeping in her own bed and sleeping through the night. she was doing pretty good after her fundo, but not gaining weight. when they suggested a feeding tube, i managed to get enough weight on her to avoid it. she did well until she got esophageal thrush and refused to eat or would chew her food and spit it out. our ped gi treated her on the assumption it was thrush because she had had it in her mouth and i had it on my breasts. i quit nursing, she went on diflucan—and she started sleeping, eating and gaining weight—then she got sick and stopped gaining and a feeding tube was suggested again—and i managed to get enough weight on to avoid it a second time. then she developed the obstructive sleep apnea and an 9inguinal hernia–i have had 5 children with inguinal hernias! once her tonsila and adenoids were removed she has hardly been to the doctor. i think some of what i told you is a repeat—-but i wanted you to know that kids do eventually get over most of this. it sounds like your docs don’t seem to think there is anything that really needs to be treated more agressively—frustrating i know—but at this point, maybe the best you can do is find whatever seems to make him the most comfortable and keep at it—-and remember that things will get bette eventually. wish i could be more help[.

[Anonymous]

That’s what I needed. The drs aren’t taking it seriously. He has an irritated larynx. His endoscopy at 9 months showed no damage. I feel like I should repeat it. If it shows no damage then what should I do. Trial him off prevacid bc all he is an irritated larynx? Keep him on prevacid to keep it ‘just irriated’ instead of potentially making it worse? Go on higher medication to completely heal the larynx? The thing is I hate having him and my baby on medication. If it keeps them out of pain then I have to do it but he is also badly constipated. I can’t help but blame the prevacid bc his diet is pretty clean. His pediatrician says the amount of irritation to the larynx being what the ENT claims is ‘mild’ shouldn’t be causing him such restless sleep and the screaming/moaning/crying. He things this is all behavioral but he doesn’t want me. He wants sleep! Its not like he wants me to hold him or anything he just

Tosses and turns. But the pediatrician insists this doesn’t correlate with the ‘damage’ he has. I don’t know im at a loss. I needed your post though. I needed someone to tell me that this will get better. That he will sleep through comfortably one day! I just needed hope. Thank you!Jfranz10152011-11-15 12:43:13

[Anonymous]

it’s frustrating when tests don’t match up with symptoms—and it is really hard to have two little ones that close in age that are both fussy. you are dealling with two fussy babies at different stages—and a serious lack of sleep. life will get better eventually and you will cherish both of those little ones—but it can be hell getting there—hang in there. one day you’ll be my age and wonder where all the years went and feeling sad that they are all leaving home!!

it seems like we just get our lives under control—-and everything changes again!

[Anonymous]

Low IGG and low IGA? And insight anyone. Just got his bloodwork done and these were the only low levels.

[Anonymous]

Hi there, I’m so sorry to hear about all you are going through. I wanted to post briefly and say that both my children now 7 and 3, have reflux, and have a combination of food intolerances and are both still on Zegerid, but their sleeping has improved dramatically…they are growing, they are healthy. My son sounds a bit like yours, with the sleep, he woke every 45 minutes and only slept 2 hr stretches at the most, until we put more of the pieces of the puzzle together when he was around 18 months old. He had severe reflux, obvious reflux and was on zegerid by 8 months old, we had removed dairy, soy and beef from my diet, also any and all acidic foods from my diet and then at 18 months we removed gluten. That was teh final piece of the puzzle for him. It wasn’t over night, but by age three he was only waking once a night or so….since age four has consistently slept through the entire night at least 80% of the time and now at 7 sleeps 11 hours straight and sleeps so soundly you can hardly wake him. I used to dream of this sort of sleep. I still sometimes can hardly believe this is my child sleeping like this. It will get better. Something will happen, you’ll try a higher dose of zegerid, or you’ll get a different opinion on the adenoids or something….and it will get better. We also did the endoscopy and ph probe when he was 11 months old and learned he was refluxing over 230 times in 24 hours….basically all day and night….and the endoscopy showed a hiatal hernia. This is the reason he’s still needing Zegerid. Zegerid has been great for us. I’m not in the medical field but I’ve always wondered if a sliding hiatal hernia, one that is sometimes in place and other times not, can show up normal on a test one time and not another time. I always think of Sylvia, actually, Christine’s daughter, who had two tests done that didn’t show her hiatal hernia and then in surgery they found a significant one. Anyway, the testing and trying higher doses of zegerid were, in our particular case, very helpful. Also playing around with the diet. I know you’ve got dairy adn gluten out, but have you done any other experimenting with diet and taking out other big allergens….corn, soy, eggs, fish, any of those things? That’s another thing to consider. Also, my daughter, who also has reflux very bad, has had ear tubes and they helped tremendously. She also had an endoscopy and the dr said her LES valve (opening to the stomach) was unusually loose. Not necessarily a hiatal hernia, but very loose. and he said this looseness could very well cause the reflux like what she had/has. He said eventually her core body muscles and the internal muscles will hold everything more solidly and that she should “grow out” of this. Just some food for thought. We were just at the ear doc two weeks ago and they said her adnoids looked a bit bad and if we put in a new set of tubes they might consider taking them out. So….I’m not exactly helping, but have experience with some of what you are talking about and wanted to let you know you are not alone. also, my daughter is sleeping most of the night, she is still waking once and then comes into our room. Her sleep was horrible as well, but not as bad as my son. I realized after he began sleeping better, that he couldn’t move at all without waking up. He is our oldest and I didn’t know any different, but was amazed the first several times I saw him roll over or move in his sleep and not wake up. He also woke every 45 minutes, naps were nightmares for both children and typically very short or at 45 mins I would nurse them again so they could sleep another 45 mins. It was very difficult each time around, which is why we spaced them 4 years apart and even then it was hard, so I can only imagine what you are going through right now. Hang in there. I also recommend trying something and being as good about documenting as you can, etc. etc. like some of the others have suggested.

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